Bone Mets Thread
Comments
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Hi Patty, it is really good to hear from you. Sepsis is an ugly condition. It takes a very long time to regain strength after severe sepsis, so take it easy.
Lynne
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LindaE, How are you doing? Do you have a date for the hospitalization and biopsy?
Hugs from, Lynne
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Good morning ladies. Hope all is well
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Patty. I can't tell u how happy we are when you're here!!! Please take care of yourself!Started the trial today- what a LONG day!!!!
Yesterday was my bday and it was great. Had dinner with my DH DD SIL and DS. DIL couldn't make it ( no surprise there!) but she had the girls call to wish me a happy bday and she even got on the phone and for the first time ever wished me a HBD. If you live long enough!!! - - maybe one day she'll ask me how I'm doing but if she does I might faint
cause then hell would have frozen over!!!Babs
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Babs, Belated happy birthday to you! It is wonderful that your family was with you to celebrate. Too bad that your DIL couldn't be there, but that is her loss. At least she called so the girls could talk to you. Your family looks beautiful, as always. Your grandson will be here before you know it. Thank you for posting the photo. Now get some rest and recover from your long day.
Hugs from, Lynne
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Hey Babs you made me laugh. Those who love you were there, and you guys looked great! Happy Happy Bday!!
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happy belated bday babs. Great pics. Who's who
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Patty first picture is my pregnant DD and her husband
Second picture is
back row my DS andSIL
front row is DH Me DD
Babs
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Patty so nice to see you're back, you were missed!
Babs, Happy Belated Birthday! The pics are beautiful!
Momallthetime, thinking of you and Dani always.
Hugs to all, Annie
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Wonderful pictures and family, Babs! Happy birthday!
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Happy Birthday Babs!
I've been quiet on this thread mainly because of my recent progression other than bone, I hang around other threads to get info and knowledge. But I read this thread all the time and it is my favourite one if I can say so.
Had my liver biopsy yesterday, 5 samples were taken. Also found out last week I now have peritoneal carcinomatosis. That gave me a blow but can't say I was very surprised with all my symptoms (belly pain, constant nausea and vomiting). I'm continuing Taxol until we have results from biopsy which should take about 2 weeks.
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Oh Linda, what a hard time you're having. I'm so sorry and I hope whatever comes next is a monster truck gunning for the gremlins. Hang in there.
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Linda so sorry to hear about your latest progression. I'm hoping your next treatment knocks the sh-t out if your mets!
Babs
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momallthetime you can buy it online at health stores I buy it dried and put a few chunks into my slow cooker on low for eight hours drain it into mason jars and store in the fridge. Because it's pretty expensive I run it through the slow cooker one more time so I get lots each time. It also comes powdered but I prefer the tea. Hope this helps and that Dani likes it takes actually pretty good
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Oh Linda I'm so sorry. Sucks we get on a treatment that we think is working and we start to live a normal almost life trying to forget that we even have this disease. Then we get this crap and have to,start again we have all been there Linda and I'm sending you a big hug. The next treatment is for NED that's my wish for you.☺️
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Linda. Oh my so sorry. I pm'd you
Babs. Beautiful family esp you
Hugs
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Thank you ladies for your good wishes. Wishing us all a pain free week-end filled with simple pleasures and lots of smiles.
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I second what Lida said. Well stated
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Linda~May This treatment be the one for you. I am so sick of good people having such a shi*ty disease. I am at such a loss anymore on this roller coaster that we cant get off!
So many people suffering everyday just to have a decent life If even for that day. Getting out of bed to face another day becomes such a challenge! It really deflates all hope of really beating this. I've seen a few good women succumb to this monster. And its just not fair. I feel like it's a loosing battle that we give every fiber of who we are to, And for what. ? So the medicine we take fails, then what next? It's a viscous cycle. I am very sick of. None of us asked for this. So what the HEL* happened???? It's like a curse. But why!?all the damn research and money and decades of this ? And you got nothing ???
Seriously? Ugh! So over it!! God bless us all. Is all I got today. ~M~
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Babs - I just spent a week with part of my family and no one once asked how I was doing, so your post cracked me up.
Patty - Rock on. Sepsis, ugh. What is that like? Are you okay.
Hugs all around and .... how are you doing!?!!??!
>Z<
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Oh Linda...I'm so sorry to hear your news. Standing with you as you consider treatments. There are new drugs and options!!
Babs, happy birthday!! Love your pictures. You look beautiful and so happy surrounded by your family!
Patty, it's good to see you back!
Z- Glad to hear you are on the mend and working out again
We're still here ladies. Here to love and appreciate our families and friends. That includes these bone mets friends!
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Hello All, ( Cross posting)
This has been a difficult week for many of us so I thought I'd send out some photos. There is a sunflower conservancy about 2 hours away that has acres and acres of about 500,000 sunflowers, with walking paths through the middle of the fields. It is amazing to walk through and be surrounded by the tall blooms. I can't go this year ( too much bone pain right now)
but here are some pics of past years. Enjoy.
Indigo Bunting on the sunflower
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Beautiful, Linda. Thank you for sharing. It brings comfort to look at nature- even in photos.
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Linda...thanks for flower pics. Keeping you in prayer.
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Lindalou so there is a world out there... sometimes you just forget.
LIndaE did you start the new tx? What did the biopsy show?
Micmei you said what most think. Dani is far from wanting to give up, but...she keeps asking what for? She is not feeling any better, and the big question is, does anyone know what they are doing?? Do they even have an idea? MO may mean well, but if there was ever a guessing game...
I just read The Last Goodbye from David Servan Schreiber, good stuff. I also read the Anticancer, first i thought it would be a lot of nonsense, but it's pretty good. Yes, one can always have a better dietary program, but really a lot of it it's just luck and of course genes. Dani was always slim, healthy, yes she had snacks but...never smoked, or even drank and so what, right in her 20's BAM. No family Hx. And it never ceased to go at her, it got so called stable at times, (with some tumors never even getting to that, but ok) but nothing more than that. It was not stress, she was at the happiest time of her life, and she did not have a bad youth, and there are more young ones, with the same Hx i've learned, not that the doctors know a/t about it, they still don't treat them seriously thinking it cannot be that a young woman in her early 20's has BC. I kid you not.
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MommATT- MBC is so common, but in your 20s is absolutely unfair. And in young women, it also tends to be highly aggressive. I am so sorry Dani feels that her treatments just aren't worth it, and cannot imagine how that feels for you to hear it and not really have a real answer to give her. I don't know of anything out there more promising than what she is taking. The hope would be that it takes hold, and the mets recede and start to disappear, buying her more time to where a functional cure may appear. But of course those things may not pan out, and would she prefer to spend her time with her family and give up trying? We all have to face that prospect, but not in our twenties, so I cannot fathom it. A kidney stone landed me in ER on Friday night (its like a heart attack on your kidney) and they had to hit me with two morphine shots plus a tramadol as well as two different anti-nausea shots because I was still vomiting, and the tech said if this doesn't cut it, I don't have anything more to offer. My first thought was if he was to say look, you are Stage IV already and we can't fix this pain, would you like to end it all now? I would have instantly said yes, thanks for everything, its been a wonderful life, but I gotta go now. Instead, the shots worked, and I came home.
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Hi all, I've read all your comments with interest. I'm de novo with extensive bone mets in every bone from the femur up to the skull, diagnosed in October 2016. I've been told my highly receptor positive MBC is treatable but not curable and that I might live for many years on hormonal and targeted treatment. I'm new to the idea that Stage IV means I will live out my life in the same pain I've been experiencing for the past year because I'm a total optimist and, because I've never been told I will die from my disease. I choose to believe I will regain enough health to actually leave the house without help for purposes other than visits to the oncologist and for tests and scans but so far there's been no evidence of that and I'm actually confused because everyone around me, especially my loving husband, is acting so differently with me, as though they're making the most of every moment with me. I vacillate between thinking I'm in denial and believing what I'm told by those who love me....that I will get better, at least better than this. Sometimes I think that I am in denial, at others I think I do accept my situation but choose not to get down about it. Does this resonate with anyone?
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Leapfrog- I can totally relate. The uncertainty of this disease is frustrating! I feel like we cannot make any long range plans, since everything depends on the next scan and how I'll feel in the future. Recently that has been very unpredictable.
My dx was at the end of 2013. I can tell you that after my initial pain and radiation I did pretty well and stayed active. The past 7 months have not been so great.
I guess it does teach you to live in the moment and enjoy the little things. Soak up how sweet your family is being.
And, keep coming here to these wise mbc ladies.
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Hi Kaption! I see that you are two years ahead of me, so what has been going on for the past seven months? Don't see the treatments in your bio there, and I haven't had time to read all the blogs...
Leapfrog- all of your instincts are correct. There is little point in trying to educate everyone else about what it means to be metastatic nowadays,its so different from the short-term death sentence it used to be. And may it evolve rapidly to something we can live with till we die of something else! Best is to be ready for whatever comes your way, with as much health and vigor as you can muster. First get stable and get pains identified and under control, don't let your mind go crazy with what the future may or may not hold. I find it very helpful not to tell almost anyone, because they do treat you differently, making it harder to go live your normal life.
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Hi Cure-ious
I know, I haven't updated my signature for a long time. Had trouble figuring out how to add treatments.
I was on Ibrance a year, then Faslodex for a short time. Then Xeloda for about six months. Just switched to Abraxane at the beginning of August.
I was bone only until January when a single lesion was found in my brain, right over my right eye. Had rads for that. Also had rads for right iliac. Those, plus the Xeloda zapped my energy terribly. I've regained some energy since getting off Xeloda. Last scan (that ended Xeloda) show large uptake in T1. At that time it wasn't hurting much. Now it is, so probably another round of rads for that. I'm hoping to get 2 full rounds of Abraxane in before that happens, but not sure.
So, bottom line is, I have vey smart cancer cells that keep beating my treatments. And, treatment fatigue had me down for several months.
As we all are, hoping for that treatment that keeps me stable without strong se. Still looking...
Thanks for asking.
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